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View Full Version : Liver involvement anyone?



marta
11-18-2010, 08:19 AM
Just wondering if any of you out there have had issues with your livers while having active WG. Mine was quite affected at time of diagnosis and also just now with this last flare.

I know that it isn't textbook (but what really is with WG?) but I think that my liver just happens to get knocked out by Wegs, and am curious if anyone else has had similar issues.

Psyborg
11-18-2010, 09:13 AM
Not directly, but I had pre-existing cirrhosis that I'm dealing with. To be honest I've not noticed any interaction between that and the WG, unlees it caused it in the first place. Biggest problem is it places a lot of limits on the treatment from what I can see so far. Honestly you are the first to mention a correlation that I've seen.

Sangye
11-18-2010, 01:11 PM
Marta, I haven't heard of Wegs affecting the liver, but you never know.

I actually think the correlation is the converse-- that maybe your Wegs was caused by a toxin which would affect the liver. And now, either that same toxin or another one has stressed your liver and caused the Wegs to flare. I don't know if I'm making sense.

DEE
11-18-2010, 05:01 PM
Marta ,my doc and i are keeping an eye on my liver fuction test results at the moment as some are particulary high
both think its drugs related as since ive come off cxt they are slightly lower
Seeing wg consult this pm and is on my list to discuss new results i got yesterday , as i still getting pain in right side and lower back
he has suggested a liver biopsy if i want but thinks it will be worth looking to see if drugs change makes any different
will let you know what he says when i get back

marta
11-18-2010, 06:35 PM
Thanks guys. Sangye, you've got the mice running the wheel again... as usual. You're totally making sense. Now just to find the connection.

Psyborg, have you found you have to use different meds because of that? If so, may I ask what they are?

Dee, they wanted me to get off the cytox because of that, and when I first got diagnosed I recall a lot of conversation about my liver by the "dream team" over my bed, but the enzymes went down when I started treatment, and they seem to be going down again since I started cytox last Thursday. It's odd. The rheumy, yup that one, is worried that it might be something else, but I will continue to think that it has to do with WG unless proven otherwise.

I see him next week, so we'll talk about next steps. I guess.

Sangye
11-19-2010, 12:57 AM
Well that trend in your liver enzymes does seem to indicate that it's Wegs. I did some quick research online and saw that Wegs can affect the liver but is "exceedingly rare." I have an exceedingly rare complication, so I kind of chuckle when I see that phrase. I suggest they check your liver-- ultrasound, etc.... As with any other organ, damage to the liver can proceed silently and become life-threatening.

Jack
11-19-2010, 02:52 AM
If it is "exceedingly rare" then you are bound to have it! That is my experience. ;)

Psyborg
11-19-2010, 06:59 AM
Psyborg, have you found you have to use different meds because of that? If so, may I ask what they are?



Not sure yet, the doctor wanted a copy of my last biopsy where they diagnosed cirrhosis. I had them send that yesterday, I think that rather than MTX I'm going to end up taking Imuran. Not 100% sure yet.

I am kind of odd in that my enzymes were never more than slightly elevated for years, but still ended up with severe liver damage. Typically people that develop cirrhosis have extremely elevated enzymes. So it's something of a mystery how this happened...I seem to have all the mysterious medical maladies, but I seem to come through them better than I should so I'm not going to complain :)

I will let you know what they end up giving me, assuming they don't give me MTX in the end.

pberggren1
11-19-2010, 11:41 AM
I collect rare things: WG, M. Abscessus, what next?

elephant
11-19-2010, 12:49 PM
Phil don't forget the crusties!

pberggren1
11-19-2010, 01:49 PM
Phil don't forget the crusties!

Oh ya. At least I have pics of those.

Psyborg
11-20-2010, 01:08 AM
Now I went out and read some articles about liver involvment. It has me wondering if my liver issues might have been the first presentation of Wegeners. I developed liver issues with basically no risk factors. They finally blamed it on my weight as I was seriously overweight at the time, but the vast majority of overweight people get only fatty liver, but not cirrhosis. Of course I never exhibited any symtoms of Wegeners until well later so I might be just being suspicious without any basis :)

Sangye
11-20-2010, 01:18 AM
That's very odd, Psyborg. Did you read anywhere that Wegs involvement would lead to cirrhosis?

Psyborg
11-20-2010, 01:43 AM
This article refers to someone with cirrhosis apparently brought on by Wegs. Though the medications we take (MTX primarily) could cause it I would think if you have some vulnerability.

Incomplete septal cirrhosis associated with Wegene... [Liver. 2002] - PubMed result (http://www.ncbi.nlm.nih.gov/pubmed/12390474)

Not sure how conclusive that is of course.

drz
11-20-2010, 11:59 AM
If it is "exceedingly rare" then you are bound to have it! That is my experience. ;)

Only us lucky ones!

marta
11-25-2010, 06:02 AM
So here's my continuing Rubics Cube Liver and Wegs puzzle. I was told to sto the cyclo again last Friday as my ggt was 352 and alt 152. The day after I stopped the started to drop, but I think it's because the cyclo was just starting to kick in (I had been taking it for 8 days). So I just saw the rheumy yesterday and he's concerned about my liver (I appreciate that) and thinks that maybe the problem might be the dapsone (as I can't take bactrim) so now I'm off the dapsone too. Slightly unnearving to be mid flare an only taking 40mg of pred a day.

He's trying to eliminate variables, but I don't know that we're going about it the right way. I'm gonna give it a few days and then make some demands. He's going to talk to an infectious disease doc today to see if there are alternatives to dapsone and bactrim to keep my lungs safe, but he did call me "strange case"....he has no idea how strange I really am.

Oh and I wore my Weggie on the outside/inside shirt to the visit and am wearing it right now as I type this at the hospital ER waiting room (waiting to get my puffy, sore,weepy, blurry eye checked out). Wooo hooo Wegener's rocks!

Sangye
11-25-2010, 07:27 AM
Marta, my case has been like that-- lots of paradoxical stuff, lots of rare stuff. It may be that they have to use rtx instead of ctx because of your liver.

A member once posted a link that explained how to undo a Bactrim allergy. (It was a medical process, not a holistic one.) I think it was before you joined. He said it cleared his up and he can safely take Bactrim. I don't remember who it was and have searched for the thread to no avail. Does anyone else remember?

Jack
11-25-2010, 08:01 AM
It was me2. Post 26 in this thread - http://www.wegeners-granulomatosis.com/forum/general-wg-chat/941-help-flu-3.html

me2
11-25-2010, 08:09 AM
It was me2. Ask and ye shall recieve. Here is the link:
Sulfa Desensitization (http://www.aids-ed.org/aidsetc?page=cm-1001_sulfa)

It has the stats that I remembered way back when I did the desensitization. Basically it works for 80% of people. Pretty good odds. You take teeny , tiny doses in liquid form and work your way up to theraputic dose- almost a couple a weeks.
It worked for me. This was many years ago and I can still take bactrim. Previously it caused an allergic rash.
I have been through wierd like you wouldn't believe -except you are all WG so you would believe. Currently my biggest problem is tongue and throat pain. My docs just shrug and don't take it too seriously. I guess if you have only had normal throat and tongue pain it doesn't seem like a big deal.

me2
11-25-2010, 08:10 AM
Doh' Jack is just too fast for me.

Sangye
11-25-2010, 08:18 AM
Ha! I had an inkling it was you, Kirk but I wasn't sure. :thumbsup:

Sangye
11-25-2010, 08:20 AM
I think it's amazing that it can be done in just 2 weeks. Someday maybe it'll only take that long to reverse Wegs, eh?

Jack
11-25-2010, 08:31 AM
They must have missed you off the list Sangye. The rest of us all got cured yesterday! :w00t:

Sangye
11-25-2010, 08:36 AM
Aw, you see? I was busy doing a Sleep Study ("Come on now, snore for the nice lady") while everyone else was being cured of Wegs. :biggrin1:

Jack
11-25-2010, 08:41 AM
Just posted on your thread.

me2
11-25-2010, 09:38 AM
Yeah, I got cured , I'm just pretending to still be sick so I can hang out with just the bestest people. I really do like ya'll and I feel grateful to have you to talk to. I hope to get to meet in person some day. Of course Sangye will notice that we all are faking being sick.

Ha, makes me think of some of the times with doctors where they have treated me like I was faking or something. Yeah, this is what I choose to do with my time instead of the work I enjoy, hiking, reading , spending time with friends, learning new hobbies, traveling, yeah doc , I'd rather be sitting here in YOUR office faking that something is wrong with my central nervous system, yeah, thats what I like to do on the weekends.

Sangye are you really doing a sleep study? I remember you mentioning it somewhere before. Or are you talking about the kind of sleep study I am doing two days after my Cytoxan infusion?
I would be interested in hearing about the study if it is the first type- the second type you need say no more , I'm familiar with it.

You know, science has produced miracles before. Your wish Sangye for a two week cure for WG is not at all unrealistic. And it could happen at any time. I remember doing research on WG way back when and finding out that the mortality rate for WG was something like 94% at two years without treatment.
This was prior to the protocol worked out in about 1975. So basically, prior to that we all here would just be dead.
As much as I have suffered (and I am talking huge here) I am still glad to be alive and grateful to those brilliant minds who all contributed to a treatment that lets us live. These days I include you, yes YOU, my internet friends who have become the unpaid members of my medical , psychological, and emotional team. Thank you. Talkin' bout Thanksgiving.

Sangye
11-25-2010, 09:45 AM
Yeah, Dr Seo reminds me at every visit how lucky I am. Not only to have treatments for Wegs at all, but that the rtx studies came out right when I needed to go on it. He said that if it had happened 5 yrs ago, I'd be out of luck, since we can't use ctx on me.

I'm so grateful for all you, too.

drz
11-25-2010, 11:59 AM
Marta, my case has been like that-- lots of paradoxical stuff, lots of rare stuff. It may be that they have to use rtx instead of ctx because of your liver.

A member once posted a link that explained how to undo a Bactrim allergy. (It was a medical process, not a holistic one.) I think it was before you joined. He said it cleared his up and he can safely take Bactrim. I don't remember who it was and have searched for the thread to no avail. Does anyone else remember?

Since I have had a rash allergy to sulfa meds in the past I asked about this desensitization process. My rheumatologist said I had enough meds now and problems without introducing a another potential variable so he discouraged it, at least for now.

Sangye
11-25-2010, 12:02 PM
Maybe down the road as you get stronger.

elephant
11-25-2010, 12:20 PM
Marta, lets us know how the eye is and sorry regarding your liver.

BrianR
11-25-2010, 04:39 PM
I just got back from Edmonton with Hana (our just turned 4 yr old). Marta is staying in Edmonton for at least the next 6 days. We spent a good part of the day at the hospital in emerg to get her eye looked at. Marta's rhemy recommended this approach as it would get her in to see an opthamologist sooner and that indeed turns out to be the case. She has an appointment Dec 6. Initial exam today did not set off any alarms. Her vision is 20-16 and no there was no other evidence of problems other than headaches. HA!, Headaches - Holy crap (please pardon the expression) but do I ever have a whole new definition of what a headache is. I've seen my wife take some pretty hard shots over the years but nothing like this!!

I read ALL your posts daily and see the BS you endure and the strength you employ to deal with "it". Hard to pick words here, but, suffice it to say that I am deeply moved by what I read from you all (y'all to our buddies to the south!). In Canada we have an expression, "giver",or perhaps, "give'r". not sure of the etymology but essentially it means "go hard" or..."never give up". You all epitomize this all-so Canadian expression.

Right now my daughter Hana is making a card for her Mom (Mum) and, even though it is far past her bedtime, I cannot interrupt; its far too important to her - and me.

Peace to all of you.

elephant
11-26-2010, 12:07 AM
Thanks for the update on Marta's status. Headaches is what drove me to the guy who diagnosed me....they were so bad I could not take it anymore...and that is what I told the doc...so he really took me serious and put all the pieces of the puzzle together. Take care of yourself and Hana and I will be thinking of Marta.:hug3:

Sangye
11-26-2010, 01:11 AM
Marta and you make such a sweet couple-- both so thoughtful and kind.

I'm glad Marta got her eyes checked. I don't remember if she had a brain MRI yet. When I hear of a Weggie with bad headaches I think 3 things: sinus, eyes or central nervous system involvement. Headaches could also be due to the meds, but in Marta's case that's ruled out because she's off them temporarily. Whatever the cause, I hope they find it and fix it quickly. Big hugs to her from me!

Fran
11-26-2010, 02:23 AM
Hi Brian, So sorry Marta is in hospital and not at all well. I hope she feels better very soon and they do something for the appalling head pain and sort things out. She doesn't deserve this ( who does ). Thinking of you all.

Fran

DEE
11-26-2010, 02:50 AM
oh dear Brian sorry to hear the news about Marta . hope they take care of her for us please take care of yourself and Hannah too, Thinking of you all :hug1::hug2::hug3:

Geoff
11-26-2010, 07:27 PM
Best Wishes Brian to you and Hana, please accept all our love and best wishes and pass them onto Marta. Going to Hospital is a accepted way of life for us Weggies but look at the positives and hope that this is the start of the end to her headaches. :hug2:

Psyborg
11-27-2010, 10:24 AM
Finally talked to my doctor again and she doesn't believe my liver involvement is associated with Wegeners at all based on my biopsy. Overall that's probably a good thing, though it would be nice to pin everything together :p

She's sticking with MTX because it is working well for me and they are just going to monitor my enzymes. Evidently the biopsy wasn't as bad as I thought.

elephant
11-27-2010, 10:28 AM
That is good new Psyborg, hope your liver enzymes improve in time!

DEE
11-27-2010, 03:47 PM
Thats good news my liver enzymes go on a rollercoaster of their own docs say we will keep an eye on it too !!!!!

Sangye
11-28-2010, 12:15 AM
Very happy to hear your liver is not affected by Wegs, Psyborg. :smile1:

marta
11-28-2010, 06:01 PM
I'm baaaack...

Very nice to be home and catching up with all you fine folks. Thanks to you all for the nice wishes and kind words.

Things are improving and now that I'm back on cyclophosphamide I know that it'll be OK in no time. Oh, the irony. I was so stoked to get off it at the end of October and now I'm pushing to get on it, and quite excited about it too. I'm not on any antibiotics as the doc thinks now that it was the Dapsone that is elevating my liver enzymes. It's funny because I'm such a geek (I went to the ER and was talking to the docs there and showed them my 'uber geek spreadsheet' with ALL of my bloodwork results since June 14 - they had a good chuckle) when it comes to looking things up, but I never once thought to look up Dapsone. It apparently has a tendency to mess with the liver. It's also used to treat leprosy, which is great cuz at least my nose wont fall off.

We'll see what happens with the bloodwork in the next few days, and hopefully I can get onto something that will protect my fragile little lungs.

All the best to you all, and I hope this season of flu's and uncertainty and head pains, and joint pains and flares and chunks is soon gone and replaced with joy and laughter and giving and receiving and love and frolic.

pberggren1
11-28-2010, 06:35 PM
I so hear you Marta about wanting to go back on the ctx. When I was flaring in late October and November of 2007 I knew I was flaring and wanted to get back on the ctx and pred to make me feel better again. Within less than a week of starting it again I was able to get out of the house and play pool and do other stuff. And then when I flared again in June of 2008 I just started back on the ctx and pred myself and let my Rheumy know. When she called a couple of days later she was a little upset and asked under whose authority did I start the ctx and pred. I said it is my authority and explained why and she agreed. I hope your liver enzymes stay normal now and your doc can find another antibiotic that will work like Bactrim and Dapsone. So are you back in Jasper now? You have an appointment in Edmonton with the Opthamologist on the 6th of Dec., right?

pberggren1
11-28-2010, 09:35 PM
Hey Marta:

I still can't sleep so I am going over my notes for my doc appointment on Wednesday. I am writing down some notes about you as well. I will ask him about the Bactrim desensitization process and if there are any other prophylactic antibiotics out there to be used in this case when on ctx. I will also ask him about Dapsone and increasing liver enzymes. If I remember correctly your GGT and ALT were the ones that were spiking. I took a quick look at me2's link to sulfa desensitization and it looks fairly straight forward. I will also bug him about consulting on your case to see if he can do it or not. I know he would be willing it is just a matter of the rules in place between provinces. He said there is so much politics in practicing medicine it makes one scream. Anyway, if you have any more questions you want me to ask him just let me know. He always sets aside an hour with me so we have lots of time to go over things. I can't believe it is December already. Where has the year gone. In fact, the last few years have seemed to slip by so fast for me. It is like one day I am 22 and the next 34. You are learning this Wegs game very well. You will be a master player in no time. Not that I want anyone to have to play this game ever, but we all have to be our own best doctors and the Wegs specialists we see and even other Rheumys, Nephs, etc. that have a few Wegs patients also expect us to know Wegs and keep track of our symptoms in a daily journal and to keep researching and to stay on sites like this. My doc encourages me to be on this site often. I have never asked him if he goes on this site but I am sure he does not have the time. He works alot of hours right now but said to me last week that he is getting another Nephrologist in to help take the load off. I said I was glad because I was a little worried he was being over worked and would get sick. I told him I am selfish and he can not ever get sick and cant retire for at least 25 years. He laughed of course. I do admit I have slipped in the keeping a daily journal or diary area. For the last 3 or so years I have not kept one going. But amazingly I can remember when I started what med and when I finnished and switched to another and so on. But I know I should get in the habit of it again because like I said above the years go by so fast and it is easy to forget some stuff when they happened 10 or 20 years ago. Starting in January I will try and start a new journal.

elephant
11-29-2010, 12:14 AM
Marta , so happy that your home and glad your on cyclo to knock this WG down. Rest easy Marta and love your spirit!
Phil, I am so sorry that your not sleeping. I know how frusterating that can be. Wishing you some ZZZZ's to come your way.

Sangye
11-29-2010, 12:38 AM
Marta, I'm glad you're going back on the ctx-- whew!

I've done the same thing with a couple drugs-- hated having to start on them initially but begging for them later. Isn't it great how well we can adapt and change? Not everyone is as flexible as a Weggie. :thumbsup:

Psyborg
11-29-2010, 09:03 AM
Glad to see you are back at home and getting better. Hopefully the ctx will knock everything back into shape.

marta
11-29-2010, 04:40 PM
Not everyone is as flexible as a Weggie. :thumbsup:

Ha ha ha... except maybe those Chinese acrobats that make your mouth hang open and your eyes bulge out as you watch the stuff they do.

Thanks gang. It's awesome being back at home and having my snotty little monster spitting at me with delight (Hana, not Brian.) I know the ctx will bring it back together - it did the first time, and it'll do it again.

Phil, don't you be worried about me. Use up all your time with your doc for yourself - you're one seriously lucky dude (who incidentally does look 22 not 34) to have your doc set aside an hour for you. Keep him!!!! Use duct tape if you have to.
Hey, by the way, in tribute of YOU - Phil, I took a photo of my chunks the other day while in the city. I'm not showing anyone, but the thought of your chunks photo prompted me to do it. I'm laughing as I type this. :lol:

Brooke
11-30-2010, 09:05 AM
Marta, glad you are back home with your family, sometimes that is the best medicine! and sorry you to hear you were sick, no fun!!!

pberggren1
11-30-2010, 10:15 AM
Ha ha ha... except maybe those Chinese acrobats that make your mouth hang open and your eyes bulge out as you watch the stuff they do.

Thanks gang. It's awesome being back at home and having my snotty little monster spitting at me with delight (Hana, not Brian.) I know the ctx will bring it back together - it did the first time, and it'll do it again.

Phil, don't you be worried about me. Use up all your time with your doc for yourself - you're one seriously lucky dude (who incidentally does look 22 not 34) to have your doc set aside an hour for you. Keep him!!!! Use duct tape if you have to.
Hey, by the way, in tribute of YOU - Phil, I took a photo of my chunks the other day while in the city. I'm not showing anyone, but the thought of your chunks photo prompted me to do it. I'm laughing as I type this. :lol:

Please show me your chunks Chunky Monkey. Send them to me in an e-mail.